Hello, everyone! It’s been awhile since we’ve given an update on little Luke, so we wanted to share what’s been going on! 

As some of you may know, Luke goes once a week (sometimes more if we suspect high levels) to get lab work done. Ever since Luke was diagnosed with MSUD, we’ve been getting his labs done at Cook Children’s in Fort Worth; however, we recently switched to Children’s Health in Dallas. We had Luke’s first appointment there last week and everything went well! We have been living in a little bit of a “bubble” the majority of Luke’s life to ensure he stays healthy and his levels remain stable, but his new geneticist encouraged us to get out as often as we wanted and that it wasn’t necessarily a bad thing for Luke to be exposed to germs. They said it will help him to strengthen his immune system and better be able to fight infections once he does get his new liver. That was refreshing for us to hear and we are excited to be working with such a supportive team while we wait for Luke’s transplant!

As of now, Luke is still the only patient with his blood type listed as status 1B in his region. Status 1B represents very sick, chronically ill patients younger than 18 years old, while status 1A patients have acute (sudden and severe onset) liver failure and are not likely to live more than a few days without a transplant. We pray for all who are awaiting a life-saving transplant and remain faithful in God’s timing for Luke’s. 

Thank you all for your support and encouragement throughout this journey!

– Mary & Adam